In the spring of 2005, I was forty years old with two sons, ages 21 and 11. Nicholas, my youngest, had been diagnosed with Asperger’s Syndrome in the second grade and was attending a special school specifically for children with Pervasive Developmental Disorders in Atlanta. Then I received some very surprising news…I was pregnant!
Jack’s newborn hearing screening
By the time his due date came around, the shock of receiving that complimentary brown and teal diaper bag at my first OB appointment had changed into the excitement of meeting another little person to love. Jackson, my third son, was born in the fall. During the pregnancy, ultrasounds of Jack revealed that he only had one kidney and that he would need surgery to correct an intestinal blockage after birth. I was prepared for that. However, while in the NICU, an ABR was completed and I learned that my beautiful baby boy was profoundly deaf.
I wanted my children to have a place they could call home.
Realizing that I was going to need a tremendous amount of support, I made the very difficult decision to move with my two boys with special needs from Atlanta, Georgia-- where medical and educational resources were abundant--to Cross Lanes, West Virginia where my mother, brother and younger sister live. Since that time I have faced many situations where the appropriate resources needed were not available and have questioned my decision to relocate. When I discussed my concerns with my oldest son, Drew, he would ask, “Why don’t you just move back to Georgia?” I know moving back seemed like the obvious answer, but not to me. I spent most of my life connected with the military in one way or another…I went from dependent daughter, to dependent wife, to active duty and back to dependent wife. Having moved so many times myself, I never had that feeling of truly belonging to a town or community. I wanted my children to have a place they could call home. Returning to Georgia or moving to another location for the sole purpose of receiving better services was not the answer for me. The best option for Jack and Nick was to have better services available in West Virginia, where they have the love and support of their extended family.
I am very happy to report that West Virginia has made great strides in meeting the needs of families statewide. West Virginia Hands & Voices was established in December of 2010. The chapter has had an opportunity to collaborate with many organizations working with deaf or hard of hearing children since then. After learning about the great gap in support for families who choose sign language as a communication option for their children, Leigh-Ann Brewer, the Director of the ASL Program at Mountwest Technical and Community College, applied for and received a grant to provide classes at no cost to families.
I really started to hear the first strum of the harp when Tennysa Mace accepted the position for the State Coordinator for the Newborn Hearing Screening Project in March of 2012. She moved quickly to re-energize the Newborn Hearing Screening Advisory Board and to reach out to agencies and professionals working with children with hearing loss. She was instrumental in West Virginia’s involvement in both the National Center for Hearing Assessment and Management (NCHAM) and the National Center for Cultural Competence Community of Learners for EHDI Programs (to promote leadership to advance and sustain cultural and linguistic competence) She also supported West Virginia’s involvement in the Improving Hearing Screening & Intervention Systems Learning Collaborative which achieved breakthroughs in addressing challenges in the systems of care designed to provide newborns and their families to quality hearing screening, diagnostic services, referrals and entrance into early intervention. When asked what the driving force was behind the progress taking place after such a short time in the position, Mace answered, “I wish I could say there was one particular reason that I have a passion for working in newborn hearing screening. It sounds extremely corny, but I want everyone to have what they need to reach their full potential. My passion is not in one particular area, but in all areas that can have an impact on the quality of life for a person. When I took this position in newborn hearing screening (although I knew nothing prior), I immediately recognized the importance of early identification and the potential impact on children’s lives and families. I believe in giving everything I’ve got to every job I am entrusted to perform. As a matter of personal responsibility, it is important to me to know at the end of the day that I learned as much as possible, did as much as possible, and tried to make positive changes when necessary. This goes for any job I have ever held (well, maybe not that telemarketing job I had in college). I have never been involved in a program where everyone was so supportive! It’s been great to have the opportunities to learn both from professionals and parents.”
More Interagency Collaboration
In addition to the strides made by the Newborn Hearing Screening Project, there are collaborative efforts being made to unify the various entities that serve d/hh children. Our Part C program, Birth to Three, and the West Virginia Department of Education established a Community of Practice (CoP) to strengthen services and collaboration for all children who are deaf or hard of hearing birth to five years of age. As the Director of West Virginia’s H&V chapter and a parent member of this CoP, I was extremely excited to see all the different professionals at the same table. The Director of Early Intervention, the Director of the WV chapter of AG Bell, the Executive Director of the West Virginia Commission for the Deaf and Hard of Hearing, the Superintendent of the WV School for the Deaf and Blind ( WVSDB), outreach members from the WVSDB, CI center Audiologists, the Low Incidence Coordinator and the Speech and Language Pathology Coordinator from WV Department of Education, SLP’s from the Department of Speech Pathology and Audiology from both West Virginia University and Marshall University, and the Director/Teacher of the only Auditory/Oral Program in WV all are active participants.
In December, the West Virginia Department of Education and MidSouth Regional Resource Center’s Three to Five Year Strategic Plan Task Force will meet to address the needs of students who are deaf or hard of hearing from preschool to 12th grade. If this pre-k -12th grade Task Force has the same amount of support and involvement as the CoP for birth – five, I can honestly say things are starting to look more like Heaven. While we are still in the beginning stages of our efforts, we are climbing that stairway, step by step.